cant get down below 30mgs

Posted , 5 users are following.

Hi everyone, been back to see the specialist today after I've been on 25mgs for 4weeks and have been feeling really terrible with very painful shoulders+neck feeling really low and on top of that had a water infection,blood shot eyes and developed scaley patches on knees ankles and knuckles. Specialist now feels there is could be something else going on as well and has had loads of blood tests and x-rays done today but back up to 30mgs so hopefully things will improve soon. Has anyone else had these other symptoms with PMR AND GCA. Serj

0 likes, 7 replies

7 Replies

  • Posted

    Hello Serj and I'm sorry to hear you've been \"in the wars\" again - it's so easy to pick up infections whilst on steroids especially at the high doses you have been on.

    Although I haven't suffered from the scaly patches you describe, before my PMR was diagnosed, one of the questions the rheumatologist asked me was whether I had ever suffered from Psoriasis (apparently it is linked to arthritis). I then learned he was trying to rule out something called Psoriatic Arthritis and this condition does cause scaly patches on joint areas.

    Perhaps someone may join in to say they have had the same experience as you but meanwhile at least the consultant is investigating further and hopefully he will come up with a diagnosis and correct treatment quickly for you. Meanwhile, I do hope that increasing the steroid dose will help and that you will have a more pain-free time ahead to be able to enjoy your Christmas. All the very best.

    MrsO

  • Posted

    Dear Mrs O

    I don't often write on this website but I do read all the letters sent in.

    I have had PMR for about 18 months and keep going up and down with the Steroids. I have now developed Psorisis on most parts of my body. I have tried different creams from the doctors without much help. Now I am trying herbal remedes. The current cream I am trying is Babies Bottom Butter from Waitrose as it was recomended by someone who said it helped them. The patches on my elbows seem to getting better. Has anyone else any ideas.

    Over Christmas I had a bad cold and it rearly knocked me for six, I was in bed for 4 days.

    Let's hope 2010 is going to be a better year for everyone, so Happy New Year to you all.

    Spammy smile

  • Posted

    Dear serj, sorry to hear what a bad time you are having, especially coming up to Christmas. I remember last year when I clearly had PMR but it had not been diagnosed - I had so little energy I could hardly move. This year, now on 8mg. was a lot easier tho' we kept things very low key.

    Now my daughter has had psoriasis for ages, mostly on her knees, feet, elbows and hands, so have 2 of my other children (they're all grown up) and my husband. With all of them it seems to have been trial and error medication wise, often a change of cream works well for a little while, then another change is needed. 5 years ago Julia developed psoriatric arthritis ( there are over 100 types of arthritis apparently), the only one in the family and , unlike PMR it seemed to effect her feet, hands and to some extent her back. But all these things, including PMR, seem to have something to do with the auto immune system and possibly a heredity factor. My mother had PMR for example. And sadly all seem to have lots of questions and not necessarily a lot of research. Incidentally sun and ultra violet light help psoriasis so holidays in the sun, not much help this time of year! Also some cases seem to involve stress - I swear my husband's has got worse when he's been really worried about something. Easier said than done! Anyway all the best for 2010, keep in touch, Green granny

  • Posted

    Thanks for your comments, the specialist did ask me if i had ever suffered from psorasis, but i have never suffered with anything like that,so the tests they took were for ANA,RA and connective tissue disease.so I will have to wait until January 15 which is when my next appoitment will be to find out if there is anything else going on. But on a much brighter note and I never thought i would ever say this, but thank god for these steroids being back up to 30mg has made a huge difference and i have been able to enjoy my christmas.Serj
  • Posted

    Spammy - good luck with continued success with the cream from Waitrose for your psoriasis. I wondered if you have tried Calendula Cream (made by Nelson's and available from the health shops and some supermarkets) - it worked miraculously for an eczema-type rash my son had had on the inside of his elbows for many months. I understand that it's also possible to buy a Calendula soap which a friend of mine purchases through the post for her skin problem which keeps it well under control.

    Serj - so pleased to hear that you improved enough with the steroid increase to actually enjoy your Christmas. Maybe you could also try the cream I've mentioned above on your rash, perhaps on one area first. Good luck and do let us know how you get on at your next appointment.

    Happy New Year wishes to you both and to everyone else \"looking in\".

    MrsO

  • Posted

    Hi Mrs. O

    Thanks for your suggestion, I will put that cream on the top of the list of things to try.. I know there is nothing that acually gets rid of it but as long as something helps with the soreness I am quite happy. I am glad that I am not a young person that likes to wear summer clothes it must be dreadful.

    Haveing a bad day today with the PMR, woke up with cramp in my legs, looks as if I have been on the booze when I try to walk. Luckily I have a very good husband who is doing the chores today.

    Take care everyone

    Spammy :wink:

  • Posted

    Hi again Spammy and well done that husband of your's for helping out on a bad PMR day for you - mine is at present cooking the dinner, so we can count our blessings (in spite of PMR!) can't we!

    Oh, I can almost feel that \"knot\" in your leg just reading about it! Yet another side effect of the dreaded steroids. I have now learned not to have a stretch on the bed when I first wake up which was a trigger for me!

    A little tip to you and to anyone who suffers from persistent bad leg/foot cramps: my close friend's neighbour is a medical research scientist and she has advised my friend to stop having the quinine she was taking to try and combat the cramps but instead to take magnesium tablets. She has been doing this for a few months now and so far no more cramps! Obviously it would be wise to check first that these are ok to take with Prednisolone.

    Hope you have a more comfortable day tomorrow.

    MrsO

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